Saturday, March 19, 2016


Early on Jacob's journey, I sometimes struggled to go from being in the hospital with a sick Jacob to enter the "normal" world of school pickup, Sarah's activities, work and all the other things we do every day. It often seemed harder to function in the "normal" world than in the hospital world where so much was at stake. To go from fighting seizures, breathing issues, and sepsis to do small talk at school pickup was sometimes a struggle. The two realities were too far apart. I especially remember a Halloween party in Sarah's elementary school after having spent an intense day at Children's with Jacob. I was carrying a smile on my face, but it wasn't reaching my heart. I also remember Sarah being very upset at the school party that evening, and I think it was her way of expressing that things were just not ok in our family.

Today was an intense day. Sarah had a volleyball tournament all day. Jacob looked fine when we left, and I knew he was in good hands with Joakim. Jacob had been seizing yesterday afternoon and evening, so we knew something was up with our boy.

We were running late due to a large accident on the highway. In addition, we got a flat tire on our car! It was not the best start to the day. Luckily, the girls had a great day, and won the whole tournament. With the help of several of the dads, I also got the spare tire on my car!

As the girls were playing semi finals, Joakim texted me. Jacob was seizing again. We knew it was time to pack our bags and find out why Jacob had been seizing the last two days.

I had a happy girl as we were going home. We got air pumped up in the spare tire, we got drinks for tomorrow's early tournament, and went home to shower, fix a quick dinner and it was time to pack the hospital bag once again.

As I was driving in to Children's tonight, I felt tired. There are few places as loud as a gym full of volleyball players. I had to find some inner strength to once again "be on" and start being Jacob's advocate for probably hours on end before we finally will see a bed tonight. If we get to our beds some time after midnight, I am going to call ourselves lucky.

Jacob's white blood count and platelet count are low, which would indicate an infection. Jacob's chest x-ray read possible pneumonia. With pneumonia possibly in the cards, the big gun IV antibiotics are now onboard. The respiratory floor is completely full, so they are moving a kid to another floor to make room for Jacob. I am hearing we're lucky we're getting a bed, since many kids have had to stay the night in the ER or even be transferred to a different hospital due to respiratory season being in full swing here. I am sipping my diet coke, since I know I have to give full report when we finally make it up to the floor some time in the coming hours.

Tomorrow, we will repeat today. Joakim will take Sarah to an early all day volleyball tournament, and I will hang with Jacob in the hospital. We just hope our car spare tire will hold up!

Our boy really needs to get a break. Please keep him in your thoughts and prayers and that he will turn a corner quickly with antibiotics on board. Joakim and Sarah are going to Chicago mid week for another tournament. I sincerely wish we're home by then, but for now we're on Jacob time.

Love, Maria.

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